The Chronic Illness Diary Of A Young Adult is a blog of a young adolescents life and health issues with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Basilar Invagination, Chiari & Chronic Pain. It covers the journey from a teenager to young adult, documenting how life drastically changes when you become chronically ill whilst aiming to help others and learn from fellow chronic illness sufferers in the process.

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Monday, 6 March 2017

At the beginning of March, I celebrated my birthday. This birthday in particular was unfortunately greeted with a flare up, throat infection, antibiotics and many unruly symptoms. I was not only facing a lot from a physical perspective, but this was also a challenge mentally due to the fact that I had warmed myself up to the idea that this year, things would be incredibly different, from a celebration point of view. Health troubles or not, this was going to be the year in which I could finally soar, plan celebrations and over ride all of the previous birthdays which didn’t go to plan due to health circumstances out of my control.

Perfecting that patience and inner peace towards dealing with milestones of time passing whilst living in a world of a chronic illness and disability is something that takes practice, with multiple tests and falls along the way. During every 'time milestone' that has passed, I stumble slightly, which is testing in the moment but a learning experience nonetheless. Having to pick yourself up year after year when milestones pass is not something that comes easily or lightly in chronic illness and disability. I feel that when we are chronically ill, we put so much pressure and emphasis on the actual date of significant milestones such as birthdays, knowing full well that if we live with chronic health problems, our special day holds the potential to hold elements of pain, regardless. It is strange to be torn between the reality of our current situation whilst avidly clinging on to the hope that things will take a turn for the better in the future.

Yet that is the thing about the life, it is unpredictable and we never quite know what it has in store for us. We hope it holds our best interest, but sometimes, we have to roll with what we are given. We have to have the grace to accept the circumstances in the present for what they are, yet there is an always an element of sadness due to the yearning or wishing for circumstances to be slightly different for the better. Occasionally, we are met with types of challenges which are mostly out of our control. We get discouraged, but we soon find a way in which we can pick ourselves back up, move on with our lives and find ourselves learning a new approach and mentality towards the next celebration we are involved with.

As a child, I was incredibly eager for my birthday to arrive. Probably a little too eager due to the fact that I would have a nine week countdown. My day was never marked by the passing of time but by the joy I felt inside through the innocence of childhood. As an adult, the concept of time could not be more present on my events such as birthdays, christmas, easter or anything celebratory. However, I feel this is a common trait in every adult once they reach a certain age or pivotal moment in their lives where time feels as if it is of the essence. That essence for me, has been becoming chronically ill and often feeling like I am much older than my years, physically, mentally and emotionally. That essence came from having to have the patience to wait for a time where my body could start healing, where things would fall into place and where I had to be lenient and tolerant with a force inside of my body that limited my mobility. I had to find a way to be peaceful with where I had found myself at any given age, due to my unforeseen, health circumstances.

Time plays such a large factor in all of our lives. There is such a pressurised, negative emphasis on time. It can cause us to unnecessarily worry, stress, panic and greatly compare our behind the scenes to everyone else's highlight reel. How many of you compare where you are in your life, at the age you are now, to that of those whom you know in reality or through the internet? I know that I do, possibly every week if I am completely honest. As an adult, I reflect upon the thought that as children, we had no concept of time passing or setting ourselves unrealistic markers to where we should be at any given age. We just rolled with the present moment, accepting and coping with it for what it was in a peaceful and content state. Without worry, anguish or pressure. Yet, when we reach adulthood, suddenly this surge of panic installs itself into us to different degrees.

We have tendencies to be our own worst critic, it is just not helpful to our evolution and designated, individual paths in life. Some of us have envisioned precisely how our lives should look or be by the time we reach a certain age. It is a pretty naive and pressured outlook to push onto ourselves, causing further health problems to contend with due to the stress of it all. We look up to our role models, parents, grandparents, family members and friends when it comes to time margins of where we feel we ’should be’, in our lives by the time we reach a certain age and through that process, knock ourselves down.

I am starting to feel worn out by holding myself to those textbook time stamps and comparison techniques of where I 'should’ be. Especially, whilst facing multiple illnesses which are yet to be under my full control. I instead aim to hope, wish and choose to believe that I am where I belong, for now. I wish to believe that I am at this point in my life for a reason, for my greater good, for better things to fall into place as and when the time is right. I am choosing to believe that eventually, everything will fall into place at the precise moment it was always destined to. I will surpass all of my goals and hopes for the future but in the meantime, the present shall have my full focus and peace. Its a working progress but one in which I wanted you all to reflect on. too.

They say that patience is a virtue. I am trying my best in learning to become more accepting of where I am in contrast to where I have always wished to be. I am learning to become more present, rather than focusing on my future and I am learning to believe that everything will eventually fall into place, including my greatest hopes and dreams when the time is right. I am not sure on exactly why I want to think in such a way, but I would much rather choose those comforting and loving thought approaches than that of ridiculing myself over my unchosen health limitations and the correlation they have to time passing. It does not help my healing journey, it does not help my confidence, it hinders my progress and it does not help my self belief and power to improve my quality of life. It possibly, doesn’t help you in evolving in your healing journey, either.

Tuesday, 21 February 2017

It seems to be that my sole purpose in life has become that of dedicating all of my waking hours to healing myself. Physically, mentally, emotionally, you name it, behind the scenes I am working tiresomely on it everyday. Is it hard? Ridiculously, I feel as if I hit a brick wall every other day. Is it draining? Beyond belief. Have you wanted to quit? Yes, yes and yes. Is it worthwhile? Certainly, I know that my future self will thank me for it, one day.

In the current realm of science and specialists, I will never be cured. Don't get me wrong, I hope, pray and have the faith daily that at some point in my lifetime, there will come a change for this outcome, but currently, a cure does not exist for my illnesses, none of them. Now if that doesn't sound particularly hopeless to you, I don't know what does. The term "incurable" has become something of which I have now distanced myself from. I try my upmost to not think of its meaning, because it's meaning to me adds a downer to my day. It seems finalised and I don't particularly like that idea in terms of health.

Sometimes, the medical report can look incredibly overwhelming and isolating. It makes you feel frightened, scared, worried and so many more draining emotions. I have many moments like that, but I now try to ask myself, - What can I do to improve MY health today? When the medical report looks hopeless, I try to tell myself that faith, hope and hard work will get me through this. I have to do my part, the responsibility for my health does not solely lie on the shoulders of my doctors. It lies on my commitment to get myself somewhat better, too.

Looking after our health and wellness is a task in which we all signed up for at birth. We do not have unlimited chances to push this prospect aside. Our health is our wealth. Whilst we were not equally given the same pack of cards to deal with during our lifetimes, regardless, we all were given something to work with. We can have assistance provided to us through mentors such as doctors, specialists of their fields, counsellors, physiotherapists, psychotherapists, nutritionists but we also need to take some responsibility for our bodies too. They are perhaps faulty by genetics, but there are ways in which we can find avenues to help ourselves. I however, have grown into a becoming a firm believer in taking your own power back in the ways you feel it is necessary and possible.

On my personal journey, healing began the moment I understood that something really was not right in my life. Let me specify, this realisation took years. I felt that my life was over before it had even begun and I truly gave up trying. I accepted the cards I had been given because I felt they were that of a hopeless outcome. My life was empty, boring and consisted of spending every waking minute laying in my bed for weeks, months and years on end, only to repeat the cycle after a day outdoors every few months.

Chronic illness has this weird way of convincing you that this is the best things will ever get. It makes you feel doomed, unhappy, different and unworthy of the beauty that life has to offer us. It makes you feel as if you are dragging around a ball and chain, without any free time of your own. It convinces you that you won't ever get better. It is almost like that bully who puts you down about something before you've even had the courage to express yourself. I felt incredibly sick of being suppressed and caged by something that was invisible and unable to be felt by the touch of others, yet on my behalf it was something that was eating me up inside and could be felt so deeply and hurtfully.

I knew that things really had to change if I wanted to build any form of a life for myself. I will be honest with you all and tell you that the thing the spurred me on the most was understanding that my illnesses had caused me to be trapped in more ways than one. They had left me with their physical impairments, but they had also left me with a defeated heart, which seemed to have the greater effect on my lifestyle. When your heart and mind are defeated, they have no way of showing you the ways in which you can heal from the damage. Chronic illness had drained all hope and belief from my system and left me feeling like those feelings would never return. Spoiler Alert - Hope and belief have slowly begun to return and whilst my disability doesn't feel much different from this time last year, I have seen a huge shift in how I am mentally coping with a long term situation like chronic illness. I now feel that hope and faith gets me through my worst moments.

Healing doesn't simply start from the parts of the body which cause the most aggravation, nor being cured by chronic illnesses. It begins when your heart and mind decide that enough is enough, you deserve so much better than your present circumstances. It starts with the aim to fix the parts of your life that have been truly broken and out of service for so many years now. It starts with making time for the parts that really matter to you. For me, it has been physiotherapy and getting outdoors in my wheelchair more often. For you it could be relationships and wellness. Every part of my existence within the world had been out of action for so long that it became normal to be the predominantly housebound girl with a crushed spirit. It became the way in which I often identified myself, which was when I knew that enough was enough. I had to find a way to fight for a life and not just an existence. I strongly express that I never want to get into that situation or be that girl ever again, that is why I work tirelessly on building my individual form of recovery, wellness and healing.

What matters is making small steps in the present. I'm an all or nothing girl, I envision something and need it to happen and when it doesn't, well I wonder why I bothered focusing on the task in hand. It's part of my personality but I'm also a realist which helps me to counteract this problem. You can not just wish upon a star for things to fall into place in your life. Disney stories are beautiful, but they are not always reality (still waiting for my Prince Charming to come and sweep me off my feet, however.)

Healing, recovery, wellness, whatever you want to label it takes guts first and foremost. It takes a ridiculous amount of your own hard work and countless days where you are guaranteed to fall down and feel as if you can not bounce up again. Its going to take patience, commitment, charisma and pacing. It's going to take the most mundane and boring routine for a very long time. Things such as physiotherapy everyday, working on making your mind your strongest tool and working on making your outlook much more positive. Most importantly, it's going to take every ounce of energy, fire and heart that you have inside of you. Yet, if I can start this path, I am pretty certain that all of you can too. If you can dream of a better life, you can work hard to make it into a reality.

I try tremendously hard to the point of tears and frustration. I want to quit and hibernate for a month, yet then I remember where I was a year ago to now. My circumstances seem incredibly hard now, but they truly should be now that I am fighting for change each and every single day. Most importantly, fighting for the life of a young women who is absolutley worthy of living a great life whether she currently has chronic illness and a disability, or not.

Throughout most of my week, I wonder what I have got myself in for in terms of healing my life with chronic illness. Taking the steps towards recovering from the lasting effects of ten years worth of chronic illness seems impossible a lot of the time. It's like finding the first piece of a thousand piece puzzle. Where on earth should you begin? Well, you do some soul searching and figure out what your current priorities are. I think about my goals for the future and how I can get closer to them with the abilities and pain levels I have in my present. My present abilities change from hour to hour, even this prospect startles me. When these moments happen, I could become defeated and willingly walk backwards to the life I had, or I can keep plodding along the path that heads towards where I wish to be, typically taking a couple of steps forward and then one large step backwards. It is rather testing, but I know deep down this risilience inside is going to get me to where I want to be in life and serve its purpose in other ways.

My circumstances in the past had tendencies to feel bleak beyond belief, yet now I have engrained a routine into my mind and day and I try my upmost to stick to it. I still have my days and my moments where I have to admit defeat in my day to day schedule, usually through the most simple of ways or tasks. Yet, the key words I used above were DAYS and MOMENTS.

Everything is changeable.

My favourite quote is, this too shall pass. When I'm in an extremely bad way, I try repeat that mantra to myself to get me through whatever I am dealing with and let me tell you, it always passes.